Will S.E.I.D. be accepted as (be proven to be) valid?

[leokitten]

The patients who go to Workwell or Keller or _ for disability assessment are paying for the testing.
Would having patients pay for the testing be permissible in a study?

From what I understand yes, the only complication is they would have to ensure patients were properly diagnosed by whatever criteria they are using in the study, preferably ICC/CCC. Then the sites would need to present a form for patients sign allowing them to use the data as part of a study but that's it.

 

[Denise]

From what I understand yes, the only complication is they would have to ensure patients were properly diagnosed by whatever criteria they are using in the study, preferably ICC/CCC. Then the sites would need to present a form for patients sign allowing them to use the data as part of a study but that's it.

Thanks for the info.

Since patients would be paying participants in the scenario you propose, how would one control for bias since those taking part have the assets to do so but many patients are too impoverished to pay for the 2 day test (as I understand it is several thousand dollars)?

 

[leokitten]

Thanks for the info.

Since patients would be paying participants in the scenario you propose, how would one control for bias since those taking part have the assets to do so but many patients are too impoverished to pay for the 2 day test (as I understand it is several thousand dollars)?

You don't, you simply describe this bias in the Materials and Methods. No study is perfect, you utilize data from patients already coming to these sites to do the test for disability or other reasons and it has its advantages and disadvantages. As you've seen in these last posts there are three total papers on the subject each having only 10-20 patients per group, so I think it's important to get more results out there, even if there are disadvantages.

It will definitely bias not only people who have the money but I believe more importantly people who can actually make the journey and do the test, ie less severe patients. But if they believe as they've touted that this test can pick out anyone with ME and the study results show this then it's very suggestive that in more severe patients the results would be even more alarming, so this bias isn't as important.

 

[alkt]

no proper publisher /medical journal would give credence to the term very suggestive and would want more trials with the moderate to severe group who would be bullied into this new trial regardless of potential harms.whether or not their intentions are well meant or yet another way of gaining funds.

 

[alkt]

From Wikipedia: Seid or Seiðr, an Old Norse term for a type of sorcery or witchcraft.... Enough seid o said!

 

[alkt]

the wonders of language you probably could not come up with a term that does not mean something offensive or just silly in one of the worlds languages. ps isnt that term used in final fantasy games.

 

[Izola]

Actually this brings up a good point.

Lupus is notorious difficult to diagnose for similar reasons. But it is not decided to take out the more distinctive signs and symptoms from the Lupus diagnostic protocol or make them less important. Also if you don't quite fit, rheumatologists don't tend to send you away and ignore you (this can happen but I don't think it is the norm; and unfortunately neurology tends to make this mistake too often... it's MS or healthy, girlie, no other options): they ask you to come back for regular follow-ups and (depending) may even trial related medicines, even without a formal diagnosis.

Would it be so difficult to manage ME/SEID in a similar way to that?

Why do we think we have to have either PEM or include more patients that might have a similar disease? We can do both.

Hi Willow: In my worst moments (50 % of time lately) I just think they want to disappear us.

I agree w/ you. This shouldn't be so difficult. I think maybe the history of ME and CFS has them dumbstruck, especially since we are not too compliant in our victimness. I wonder how many of the unidentified lurkers on this site are the very same ones who block our medical progress in one way or another.
iz

 

[Goodness to M.E.]

Myalgic Encephalomyelitis is a perfectly good name, our neurological illness is not just intolerance to exertion, it has many other symptoms.

As Justy says, 'SEID' is bullshit, it's also DIES backwards ; I am not happy either.

I agree, changing the name when M.E. is well defined is not going to provide us with the much needed medical care and attention we are in such desperate need of. When M.E. has the same funding and medical care as cancer, then we will have medical equality for all!

How would the world respond if the name breast cancer was changed to chest ulcer and you have to have it for 6 months before being diagnosed and treated?

Next we will be told the world is flat not round. Please, give me a break!

 

[alkt]

a new name for a disease that was at least partially understood before vested interest rebranded it as c f s may well allow said interest to obfuscate matters for an even longer period allowing the phsycologist to further line their pockets at patients expense i personally like atypical polio as me was called before 1956 if i have my dates right. sieds sounds like more of a rebranding exercise than the sea change we would like . to address the research and treatment of people with serious debilitating conditions regardless of what name.

 

[leokitten]

no proper publisher /medical journal would give credence to the term very suggestive and would want more trials with the moderate to severe group who would be bullied into this new trial regardless of potential harms.whether or not their intentions are well meant or yet another way of gaining funds.

I disagree, they only need to show a downward trend between the mild and moderate patients to suggest with confidence that more severe patients will be even worse.

 

[Goodness to M.E.]

Well worth the read regarding the history of M.E. and why/how CFS came about.

 

[leokitten]

This is an earlier study, which appeared in the Journal of Chronic Fatigue Syndrome:

http://informahealthcare.com/doi/abs/10.1300/J092v14n02_07
Diminished Cardiopulmonary Capacity During Post-Exertional Malaise
2007, Vol. 14, No. 2 , J. Mark Vanness, Christopher R. Snell, and Staci R. Stevens

Here's another from 2010:
http://www.translational-medicine.com/content/8/1/93
Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity
Ruud CW Vermeulen1*, Ruud M Kurk1, Frans C Visser1, Wim Sluiter2 and Hans R Scholte3

The first study isn't listed on PubMed but the second one is.


It wouldn't be ethical for this test to be anything other than voluntary. I don't think it should be used diagnostically. For me, the value in these studies is in their potential to reveal what has gone wrong, not in demonstrating that there is something wrong.

Fluge and Mella are using CPETs on a voluntary basis in their Phase III trial but I can't recall if they are repeats or just single testing to demonstrate a change in performance in response to rituximab. I don't know if they are doing any subsidiary metabolic testing before and after the CPETs - hope so.

I found a fourth paper from Snell et al 2013:

Discriminative validity of metabolic and workload measurements for identifying people with chronic fatigue syndrome.

Although it has to be said that none of the four total papers on CPET that exist in the literature and that we've referenced in this thread compare ME/CFS patients to other fatiguing diseases. We know anecdotally from Workwell and other sites that this test discriminates ME/CFS from other fatiguing illnesses (MS, cancer, etc) but this should be published. In addition they should also publish results on cohorts of people with psychiatric illness e.g. depression to show that they perform exactly like healthy controls in this test. This would force the scientific and medical community to admit this is a real physiological disease.

 

[Denise]

I apologize in advance if this http://www.translational-medicine.com/content/12/1/104 article
"Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment"
has already been brought up in this thread.
(Just want to be sure it is not overlooked.)

 

[redaxe]

I apologize in advance if this http://www.translational-medicine.com/content/12/1/104 article
"Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment"
has already been brought up in this thread.
(Just want to be sure it is not overlooked.)

I'm sure it's been discussed somewhere on PR

I'm sure that part of the problem that the SEID rebranding won't resolve by itself is the amount of papers the psychobabblers have published pushing their CBT and GET and the influence they have over the wider medical community. Unfortunately until those papers are withdrawn then it's going to continue to create a confusing environment for a doctor or researcher to learn about the disease and for patients to be helped.

The problem is the psychobabblers influence extends to government, insurance agencies and medical research funds. Until we really start to get more rituximab studies out and hopefully find a biomarker or something than I feel like the SEID name isn't going to do much good on its own.

A name is nothing if we don't have the science, the diagnostic tests and validated double-blind RCT treatments to go with it or at least a drug that reduces the symptoms. If we got approval for ampligen that would be a great step in the right direction because at least if your diagnosed there is a drug you could ask your doctor to give you. It would give patients power to get a treatment that might change their lives. At the moment we're stuck in a limbo.

 

[alkt]

I'm sure it's been discussed somewhere on PR

I'm sure that part of the problem that the SEID rebranding won't resolve by itself is the amount of papers the psychobabblers have published pushing their CBT and GET and the influence they have over the wider medical community. Unfortunately until those papers are withdrawn then it's going to continue to create a confusing environment for a doctor or researcher to learn about the disease and for patients to be helped.

The problem is the psychobabblers influence extends to government, insurance agencies and medical research funds. Until we really start to get more rituximab studies out and hopefully find a biomarker or something than I feel like the SEID name isn't going to do much good on its own.

A name is nothing if we don't have the science, the diagnostic tests and validated double-blind RCT treatments to go with it or at least a drug that reduces the symptoms. If we got approval for ampligen that would be a great step in the right direction because at least if your diagnosed there is a drug you could ask your doctor to give you. It would give patients power to get a treatment that might change their lives. At the moment we're stuck in a limbo.

having recently seen news/posts about the cost of ampligen i doubt many patients will truly benefit especially here in england n.i.c.e who decide which drugs will be paid for is not going to allow the prescribing of ampligen upset to a few during a trial period. going by present reports of it helping one in three who have had the E B V diagnosis . it does not look like the miracle cure that many people would like to believe but it might point the way to better medical treatments for M.E/C F S. sufferers. just looked at price of rituximab one thousand pounds for fifty mls infusions also not likely to get past n.i.c.e. s costing rules.

 

[Izola]

I think we don't need any more strange names. It seems To me "Myalgic Encephalomyleitis," is fine and with historical dignity predating the whole loud, discrediting decades.

"CFS" is just an insult, as intended.

I wouldn't want to tell anyone I had SEID.

30 years of mocking is enough.

The Psych's are getting gone, soon with exponential speed, I would expect, given scientific progress and patient knowledge.

I want to re-brand ME as ME. It would be cheaper and easier. We already use it. iz

 

[alkt]

I think we don't need any more strange names. It seems To me "Myalgic Encephalomyleitis," is fine and with historical dignity predating the whole loud, discrediting decades.

"CFS" is just an insult, as intended.

I wouldn't want to tell anyone I had SEID.

30 years of mocking is enough.

The Psych's are getting gone, soon with exponential speed, I would expect, given scientific progress and patient knowledge.

I want to re-brand ME as ME. It would be cheaper and easier. We already use it. iz

and when their is actual physical proof.will the corrupt physcobabblers and their funders be dragged before a judge or will there be a whitewash after all they have sucked in various governmental departments all afraid of class actions.

 

[Izola]

and when their is actual physical proof.will the corrupt physcobabblers and their funders be dragged before a judge or will there be a whitewash after all they have sucked in various governmental departments all afraid of class actions.

I'd think, all of the above.

I think "No Fear" is good.

As sick as I was years ago, I dove into the fracas and stood up to some of those who were mal-treating me. I almost crawled across an insulting doctor's desk while verbalizing medical facts to her before I was aware of it. My "fabric" was a bit torn from illness, but I wasn't going to stand someone using their position to serially insult me.

Having practiced a bit of criminal law, I found you have to scare the ones who are about to scare you, including opposing counsel and, sometimes, doctors. Crawling over a desk is not effective. Now, I still do my share, though more delicately.

I have heard that the psychs are dissipating somewhat. The really dumb ones will stand in the line of fire, others will be crafty in their milking the system to the end.

Yes, it will take a while and there will be victims. We are already in a blood bath,(from psychs, too) the nay sayers and all the confusion, illness, governments and other crap.

Well, a bad migraine has me in a vice. iz

 

[alkt]

sorry about your bad migraine i hope it was not caused by reading this thread. hope it improves soon.

 

[Izola]

[QUOTE="alkt, post: 633644, member:T
I just erased myself and you with a self motivating pillow. A lot of junk on my "island" -- bed have minds of their own.

No, I do migraines very well on my own.

I am so sorry, I didn't mean to erase. It was a hopping ________ pillow. iz izn't rt now